The Power of the Powerless

I love to teach. Most people who know me know this. I started, ironically, working with special needs kids (God had that one planned all along didn't He?) then on to a day care, a preppy Franklin pre-school, and finally to Liam and the kids I kept here. My greatest challenge came with a little round face angel with eyes as blue as the Heavens above. I've done well by most of these kids and have been complimented on my ability and enthusiasm for the job. I would like to tell you about someone that is a far greater teacher than I'll ever hope to be. Someone our society would regard as a taker, incapable of giving. Someone some would classify as a "burden" rather than a gift from the hand of God. Someone who in almost three years of life has never uttered a word but whose very existence in this world speaks volumes. It speaks of faith, hope and courage, of compassion and acceptance, of unconditional love. My so called "powerless" special needs baby has taught me all these.
I will care for Lane on the most basic levels for the rest of his life. He cannnot sit, feed himself, dress himself or do anything else that life requires of us. My life's calling now is to raise my "incapacitated" son, doing everything for him. I will never "hear" him say thank you or I love you but it doesn't matter. I will go on providing for him and treating him with dignity and respect. He has taught me not to need my own emotions reciprocated like I seem to need with Liam and even Will. I have learned to appreciate those fleeting moments when he does connect with me through a smile or if he stares at me with those blue eyes that seem to know so much, with a gratitude I never could have known before. I'm reminded as I watch him stare with wide-eyed wonder at those beloved puppies of his or that crazy bird Laura brought him to always delight in the simplest of things. There are far greater things than money can buy. A lesson that seems to get lost quiet easily in this town.
He has taught me compassion for other people. We all have our cross to bear, some are just heavier than others. I now realize that what you think someone's life is like may not be anywhere near the truth. "Judge not, lest ye be judged". I have a whole new understanding of this now. I've learned to accept that this way became my journey and I will not only face it with courage but embrace it and sit back and marvel at how God is using this to mold Liam into an young man with character and wisdom beyond his years. I can't begin to know how far reaching the lessons Liam is being taught now will go. I know with every fiber of my soul that he will be a better person because of his "powerless" brother. I know Liam has walked every step of this journey with the grace of an adult not the grief of a child. In Liam's eyes they are equals. This is not a child not fully understanding the severity of his brother's disabilities, this is complete acceptance and unconditional love for who he is. He has shown Lane nothing but respect, love and dignity. There are a few adults who could learn a thing or two from my little boy. He answers his friends questions straightforwardly, never making excuses for him because there are none to be made. He is simply his brother or "his baby" as he used to call him. I am grateful to be their mom. "And a little child shall lead them" Isaiah 11:6.
Lane has taught me courage. First as I watched him fight to live and now as I watch him struggle to learn the simplest of tasks. I know that I will never give up on him. He has given me the courage to face every challenge we are presented with. Be clear, fear is still a big part of my life. You never know what's going to go wrong with him at any given moment. And of course there's the fear of the unknown. What does the future hold for that round faced little angel that's snoring in the living room right now? How long will God allow me to hold that baby in my arms, tuck him in with puppy, kiss him good-night, drag him to therapy and doctor's appointments, sing to him, read to him, pray over him and love him? And my greatest fear... how will I ever let him go if that is God's will?
The answer to that lies in the greatest lesson that Lane Carter has taught me. FAITH. I've been brought to my knees before my Father's feet many times during this journey. Lane Carter has given me a priceless gift. He has brought me to my Saviour. I've believed in God my whole life. I've never doubted that He existed or anything like that. But Lane has made ne hunger for a deeper understanding. I know that I must "praise Him in the storm". Lane would not be here if not for the grace of God. I've seen God at work in many ways since we began our long road home. His healing touch is still with us. I know with every ounce of my being that Lane will be made perfect and whole one day. One day he'll be able to run to me and throw those fat little arms around me and say I love you mommy. One day I'll be there to witness it. I take great comfort in knowing that some day Heaven's gates will swing open wide for my baby. "Blessed are the pure of heart, for they shall see the face of God".Matthew 5:8 Something in my soul whispers don't get distracted with what you can see. It is for freedom that He came and freedom we shall have.
My heart aches over what Lane's life could have been but rejoices over what it is. To be able to say you were the reason someone knew God is a quiet an accomplishment for someone so "powerless" and broken. This is what Lane Carter's legacy is. Pretty powerful if you ask me.

Somewhere Over the Rainbow

Well here we are again. Another night in Vandy. This time it's seizures that brings us here. Our day started at 5:30 or so with what we thought was a typical Lane seizure. It wasn't. He just couldn't seem to come out of one before he'd go right into another. We gave him the Dyastat that I was hoping we'd never have to use and then called 911. In just a little bit Lane and I found ourselves in an ambulance " one time emergency to Vandy Peds, one rider onboard." Yes, I've listened to that scanner way too much. He was calm, stable and seizure free all the way. His heart rate was at times 200 which is very high but understandable due to the seizures. I got to hold the oxygen to him to help bring it down. Now I can say I've assisted in the back of an ambulance. The paramedic said he liked to involve the parents because it helped keep them calm. Darn, I thought he was letting me help because I was so calm. I admire anyone who can do anything in the back of an ambulance going 80+ miles an hour. It's not easy to hold Oxygen steady let alone anything else. We arrived to a roomful of people waiting for us and began our assessment. Before long my beautiful boy was completely relaxed, awake, alert and smiling more than I've seen in a long time. Every time I'd cough, which was alot, he'd grin real big. That smile of his could light the world. All of a sudden though he stopped, turned very red and became very stiff. His heart rate was 199. Three meds and 30 minutes later he finally stopped seizing. This little episode earned us an EEG and an overnight stay. Both of which I was glad for. I need answers and maybe the EEG will give us some. I can't push IV drugs at home and that's what it took to bring him out of it. He remained stable throughout but if he hadn't they have the means to help him. He's been fine since. We get to go home tomorrow if we have a good night.
So why did I entitle this "somewhere over the rainbow"? " Because somewhere over the rainbow skies are blue and the dreams that you dare to dream really do come true. Someday I'll wish upon a star and wake up where the clouds are far behind me, where troubles melt like lemon drops... Somewhere over the rainbow bluebirds fly,why then oh why can't I?" There is so much I don't understand. Why does every day seem to be harder than the last? Why must an innocent child suffer so. Will it only get worse? How will I care for him when he's bigger than me? I could go on but you get the idea. But amidst my fears lies the one thing I know for certain with a childlike faith. One day my dreams of a seizure free, happy ,perfectly healthy beautiful baby boy with eyes as blue as the sky will come true. One day Lane Carter will walk and talk and laugh and play. One day Lane Carter will fly... Somewhere over the Rainbow...